prednisone

[frhorngal]

Thanks for your support and encouragement Lizz-

I did pretty well on the doxy/flagyl regimen that you are hoping to start for Lyme…it wasn't until my abx were changed to azithromycin/plaquenil and then stopped) that things went really south.

RA/Lyme: 100mg Minocin (brand) MWF, 3mg LDN, 10mg CBD- BID

[frhorngal]

Maz, you are brilliant…simply brilliant…how on earth do you keep all of this stuff straight! My head spins just with Lyme/RA!

I will have my doc add cipro once I get through this prednisone, diflucan, and azithromycin jungle! I can't speak for her but I imagine she would be very open to consulting with another LLMD based off of my experiences working with her.

RA/Lyme: 100mg Minocin (brand) MWF, 3mg LDN, 10mg CBD- BID

[Maz]

[user=414]frhorngal[/user] wrote:

Maz, you are brilliant…simply brilliant…how on earth do you keep all of this stuff straight! My head spins just with Lyme/RA!

I will have my doc add cipro once I get through this prednisone, diflucan, and azithromycin jungle! I can't speak for her but I imagine she would be very open to consulting with another LLMD based off of my experiences working with her.

Thanks, Frnhorngal…gosh, no…not brilliant…believe me, I get in a muddle all the time and I can be a menopausal menace. :roll-laugh: Just sticking around here every day for a few years and you pick up a lot.

I'll send you a PM with the bartonella research you can share with your physician, as it may help. Also, you may want to look into the alternative abx for bartonella. Levaquin and Cipro are pretty heavy-hitters and have black box warnings re: tendon rupture.  For this reason, I chose Rifampin over the fluoroquinolones, though I also know some folk here who have done really well on Cipro and Levaquin. It's one of those risk/benefit deals we just have to decide for ourselves, getting informed about these abx and deciding what's best for one's self, ya know?

Will send PM with info in a mo.

Peace, Maz

[carries]

Hi! I was on 5mg prior to starting minocycline. I continued to take it for the first 4 mths after starting mino too! Then after that I slowly started to wean off the prednisone. I am now prednisone free….and the mino is working beautifully! I am completely pain free!!! I am not sure that I would have had so much success with mino if it werent for the prednisone. I say go for it! Maybe she could just keep you on a low maintanance dose of 5mg. I had no side effects on that dose…other than the hair issues when tapering. Good Luck!

 

You may want to add 4000mg of fish oil (GNC)into the mix too its a natural antiinflammatory. Vit B complex also helps with pain too!!! These were both recommended by my dr.

[YG]

Hi Carrie,
May i know from 5 mg prednesone. then how you wean off and whats the quantity to take and for how long?  I am taking prednesolone for 4 months from 10 mg reduce to now 5mg last week and now trying 2.5mg.  Too much flare and wselling when i cut down to 2.5mg.  But i presume is just for my body to adapt to this dose?

pls share…

YG from Malaysia

[carries]

Hi! I was at 5mg…and I went down one mg every two weeks. Then once I got to 3mg….I then went down by the .25mg. So my dr had me then weening by the .25 every week instead of two. So I went to 2.75 one week then the following 2.5 mg …then the next week 2.0mg ….then the next 1.75mg…….etc…….until I was down to 0.25mg…..then after that I had no problems what so ever . Maybe two days of soarness but that is to be expected my dr said….but after two days I was fine. I am prednisone free after being on it for a year daily….I was on it on and off the year prior…..and we decided to just do a 5mg maintainance dose rather than the on and off approach and it seemed to work. I was probably on the 5mg for 8-9months. Then I started to taper by the 1mg….then once i got down to 3mg cut it into quarters. Hope this helps!

[randyremote]

My first post-
frhorngal, much of your story resonates. They tried all kinds of
medicines on me, nothing worked. For months I was in intense
pain, worsening all the time. Like you, my labs always came back
perfect-puzzling the many docs I saw. Prednisone was finally prescribed,
and it really gave me my life back. I was started on 30mg, and
eventually down to 10mg, which I cannot get below without a
return of symptoms. I have been on 10mg for a year now.
Any amount above that, I can feel the side effects of the drug. 
Some people get manic, like on speed, you're always hungry, and
your skin gets bumpy. Long term, large dose use has serious health
effects like diabetes and osteoporosis.
I am reading Dr. Brown's book, and I think he would say that the
prednisone is masking the symptoms and allowing the disease to
spread, so I am interested in pursuing other options, but it sure has
been a big help, even if only temporarily.
RR

[Steve201]

RR

I'm going to be rather blunt if you don't mind…you need to get off prednisone soon…it's doing some serious damage to your pancreas….it maybe a wonder drug on some things…but it's bad in many others….with that said…are you on anything else like AP???….cuz that will hopefully help you out alot…but it's going to take some time..

 

Steve

[randyremote]

Steve,
I would love to get off of it. I tried antibiotics before I was on it, but I was thinking I was having a Lyme attack. Whenever I had a Lyme attack before, doxy knocked it out in a matter of days. This time, nothing worked; I tried amoxicillin, standard drugs for Bartonella, etc etc…as well as the NSAIDs they gave me, and plaquenil. I am interested in minocycline. I tested neg for RA but they say I have autoimmune inflammitory arthritis. My doc can't say whether it's related to the Lyme Disease.
I am certainly open for suggestions.
Whenever I try to go below 10mg of prednisone, the stiffness and joint pain comes back, in fact 10mg just barely keeps it in check.

[lynnie_sydney]

[user=2511]randyremote[/user] wrote:

Steve,
I would love to get off of it. I tried antibiotics before I was on it, but I was thinking I was having a Lyme attack. Whenever I had a Lyme attack before, doxy knocked it out in a matter of days. This time, nothing worked; I tried amoxicillin, standard drugs for Bartonella, etc etc…as well as the NSAIDs they gave me, and plaquenil. I am interested in minocycline. I tested neg for RA but they say I have autoimmune inflammitory arthritis. My doc can't say whether it's related to the Lyme Disease.
I am certainly open for suggestions.
Whenever I try to go below 10mg of prednisone, the stiffness and joint pain comes back, in fact 10mg just barely keeps it in check.

Randy – I think you'll have to be on abx for alot longer than standard IDC guidelines. Are you seeing an LLMD? One of the U.S. Volunteers would be happy to send you a list.

As for the pred, your experience of pain and return of symptoms is pretty well what every person who has ever been on it has had. Its immediate relief is seductive, the payment for this comes much later. Your adrenals would not be functioning properly having had the steroid pred supplied from outside your body, hence the pain. The last 5 – 10 mg is generally the worst. It is not just your pancreas that is in danger, your bones are too and pred is completely contra-indicated in Lyme treatments as it suppresses the immune system. If you use the search box above and type in 'weaning pred' alot of posts will come up about how others have managed to successfully wean themeslves off it. Generally it is in miniscule drops. Lynnie  

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[randyremote]

lynnie, thanks for your reply. I have indeed taken antibiotics for extended periods, and have also seen all kinds of docs, including LLMD, ozone treatments…
I will read the pred topics you suggest. My experience with Lyme was consistent for over 20 years-whenever I got reinfected (by another tick bite) which has happened
probably ten times, I've taken doxy or amoxicillin and gotten over it, or so I thought. My point is, it worked quickly, even though I might take it for 6 weeks. By the time 2 weeks went by I was back to normal, no symptoms. This time was different, and nothing worked that worked before, nor did the slew of other drugs they threw at it. My straight doc thinks it is 'post Lyme syndrome', which, he admits, is a total mystery. I am starting to think that the Lyme stimulated an RA type arthritis, and maybe taking minocin would both help quell the disease, and allow me to get off the steroids.
I am glad to have found this forum, and appreciate the knowledgeable people here.

[lynnie_sydney]

Randy – many people with diagnosed Lyme who post on this site have chronic Lyme and have been dealing with various manifestations of Lyme and co-infections for some years. Have you read the 2008 Burrascano Guidelines for Treatment? It contains some very interesting material regarding treatment, including that for chronic Lyme. If not, here's a link to it on the ILADS site. Lynnie 

http://www.ilads.org/lyme_disease/treatment_guidelines.html

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Kim]

Hi Randy, and welcome to the Roadback forum from another Lymie.

Not meaning to gang up on you, but Prednisone and Lyme really don't mix.  The last thing you want with Lyme is a suppressed immune system, you need it fighting hard.  Lyme is very cyclical and will lay low for awhile and can then resurface.  My LLMD is finding that many people are unable to get over that last hurdle due to underlying strep infection.  I'm in that group and feel better now that we've been addressing that.

You can use the “search” button and read numerous posts on this very topic.

Take care…..kim

[frhorngal]

Well I did it- I finished a 12 day burst/taper of prednisone and I am so unbelievably happy that I did. Though my pain/swelling never went away, it certainly helped. I have been able to walk, kayak, do basic chores around the house, play my instruments without difficulty, and do pretty much everything I could 6 months ago. It almost feels like that DeNiro/Williams movie Awakenings. I am petrified of regressing now that I am no longer on it. Since it was a short course, I didn't really experience any of the scary side effects.

I am guessing that the inflammation was preventing the abx from penetrating. I'm currently experimenting with a pulse dose of mino (100mg MWF) and zith (500mg TThu). Keeping my fingers crossed for a positive turn in my treatment journey. Thank you all for your candor, wisdom, and insight. It is never an easy decision to take a particular med. Different things work for different people. Everything has a side effect.

RA/Lyme: 100mg Minocin (brand) MWF, 3mg LDN, 10mg CBD- BID

[carries]

Hi Randy! I was on 5mg of prednisone for the past year. I am finally prednisone free. I honestly have to say when I tapered I would go down by the quarters ….example 4.75mg…4.50…4.25….week by week. I didnt have any difficulties going down by the quarters…when I went down by the 1mg I was achey and sore for about two days so that is why I decided to go down by the quarters….and boy was I successful. Try that approach it may work for you too! Its time consuming and a pain in the butt cutting up but its so worth it!!!!

I truely believe the mino worked because of the prednisone. IT helped penetrate deeper. The mino only took about 6 weeks to start working. Which for many takes months even years. I also am on plaquinil as well. So maybe once you start the mino you will be able to taper more effectively. But I agree with everyone else…you dont want to be on it for long time periods…not good! My dr had me on 5mg and he said that was a safe dosage but that he didnt want me on it for long and after about 10mths he said it was time to taper off. I did and it was successful!!!!

I wish you well! Hope this helps!!!

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